Dr Joneja's Guides to Histamine Intolerance
Dr Janice Joneja, a world expert on histamine intolerance, has published two books on histamine intolerance:
A Beginner's Guide to Histamine Intolerance – read more about it here.
Histamine Intolerance: The Comprehensive Guide for Healthcare Professionals – read more about it here.
Buy the ebook from Amazon here.
About two summers ago I had my first reaction. I was at a cottage and one of my eyes got very itchy and I rubbed it and it swelled immensely. I didn't notice until I looked in the mirror. Then about 7 months after I went away to the Caribbean and my eye was itchy and I scratched it and it swelled. I felt it swelling but didn't panic because I figured it was just dry eyes or makeup. I thought maybe it was something seasonal too.
A month later back in cold Canada, I was at a birthday party and by the end of the night my eye was really itchy and I rubbed it and it swelled up. But I had way too much red wine to care and I was on my way home. Next month, the same, but this time sneezing, runny nose, eye swelling, and panic. I had a lot of fruit that day and not sure if I had wine. Anyway progressively this has gotten worse, where both eyes swell; initially it was only one. And I have a lot of anxiety and panic.
Unfortunately because of my anxiety I felt that it was the food I was eating and have eliminated most of the foods I have eaten my whole life and have lost an incredible amount of weight. I ended up in the hospital three times because of my panic and they basically gave my benadryl and on the last visit a prescription for an epipen - which of course gave me more anxiety. Recently I have broken out in hives. I try not to panic now and take a Reactine right away and this has seemed to help so far.
I've been to an allergist and he has told me I have seasonal allergies to ragweed, pollen and grass. He said I don't have food allergies although my last test showed onion and rye. He said that it was false positive and not to worry about it but I of course have taken onion out of my diet too. This was before the last two hive reactions. The allergist did say I am allergic to cocomadropyl betaine and gluteral, and cobalt, but all unequivocal. I have tried not to have these ingredients in my toiletires. I do use Dove Sensitive which has the cocomadropyl betaine because I haven't really found anything else yet.
Last week I was researching on the internet to see if I could figure some of these things out myself and came across Histamine Intolerance. I'm not sure if this could be what I'm going through but it kind of makes sense. I'm trying to follow a low histamine diet now but am still afraid and frustrated. I haven't had any type of reaction since I think the end of January so I'm keeping my fingers crossed that this may help. It's been very frustrating not knowing and being afraid of the worst all the time. I've talked to my doctor about this and he says it's not likely. Is there some testing I can get done to see if my gut is out of whack or something. Does this sound like histamine intolerance to you?
I turned 50 last September. I'm not sure if I mentioned that my back gets really itchy sometimes and my breasts too.
Dr Joneja says:
The symptoms you report and their onset presents a picture that I see fairly often in my practice. The rather frightening appearance of what seems to be signs of a severe allergic reaction, associated with high anxiety, closely resembles an anaphylactic reaction. In the majority of cases the sufferer rushes to the hospital fearing the worst. So often the patient is treated with a quick-acting antihistamine (usually Benadryl) the reaction subsides, and he or she is sent home, usually with an EpiPen. Subsequent consultation with an allergist typically results in negative reactions to all the common allergens and after several such episodes without a clear-cut diagnosis the suspicion of a psychosomatic cause for the repeated reactions is raised. Sometimes the patient is referred to psychiatric services for management of their panic attacks, which is frequently unsuccessful.
I first reported the association between histamine intolerance and anxiety and panic attacks in my 2001 paper, Outcome of a histamine-restricted diet based on chart audit. (1) I had noticed that several of my patients with histamine intolerance reported that their “panic attacks” had completely resolved after they had carefully followed the histamine-restricted diet which I had prescribed for their symptoms of histamine intolerance. In all cases I had previously been completely unaware of the panic attacks since neither I nor they had thought to mention their occurrence during our consultation sessions. As a side-note: I wonder how many people now being treated by psychiatrists and psychologists for “panic attacks” are actually experiencing histamine intolerance, and would respond better to a histamine-restricted diet?
Anxiety or feelings of panic are quite understandable when one considers the progression of a histamine sensitivity reaction. Histamine causes the widening of blood vessels as part of its mode of action. This allows more blood into the reaction site in a protective inflammatory response. As a result of the widening of the blood vessels there is less resistance to the heart pumping the blood, so blood pressure drops. This triggers a response of the cardio-vascular system that increases the heart rate (tachycardia) and causes feelings of high anxiety or panic because it appears that the body is under immediate threat. This same effect occurs during an anaphylactic reaction because a large quantity of histamine is released in that response. However excessive histamine in histamine intolerance is the only “inflammatory mediator” (biochemical agent that causes or “mediates” reactions in the immune system) involved, whereas in an anaphylactic reaction, many more powerful mediators are activated, which in severe cases can result in cardiovascular collapse and death. A histamine reaction alone will never result in death, even without treatment, regardless of how ill the patient feels.
You report the onset of your symptoms as itching (in your eye), and swelling. The next array of symptoms included sneezing, runny nose, eye swelling, and panic. Later you report hives, and itching on your back and breasts. All of these symptoms are entirely typical of excess histamine. Your allergist diagnosed environmental allergies, which of course will lead to the release their own battery of inflammatory mediators, including high levels of histamine, thus contributing further to the total amount of histamine in your body.
So why, two years ago, did these symptoms suddenly appear, apparently out of the blue? The answer lies in the information you provided in response to my further question: you are now 50 years of age. Two years ago you likely entered peri-menopause, or menopause, and your hormone levels, especially oestrogen and progesterone, changed dramatically. As a result, the histamine controls in your body were affected, and you developed histamine intolerance. This is a relatively common observation in people who are likely to have a lower than normal level of the enzymes that break down excess histamine as it arises in the body in order to maintain a “normal” (non-reactive) level. This is usually an inherited condition, so I would not be surprised to learn that other members of your family have experienced similar reactions.
So – what can you do about this? First of all, in spite of what you may now read on the internet, there are no tests for histamine intolerance at this time. Some practitioners offer tests for diamine oxidase (DAO) levels (the major enzyme system that breaks down excess histamine), but this will not be helpful as low DAO in itself is neither diagnostic nor particularly helpful in therapy at this stage in our understanding of the condition. Measuring levels of histamine in your body again is unhelpful as histamine levels fluctuate throughout the day in response to need. For example, after every meal histamine rises because it is required for the release of gastric acid in the stomach, essential to proper digestion, especially of protein. The indicators for histamine intolerance are as I have described: symptoms resembling allergy in the absence of diagnosed allergy.
The condition is best managed by closely following a histamine restricted diet, being very careful to replace all the restricted foods with “safe”, allowed foods of equal nutritional value. You should never lose weight on this diet as it will provide all the macro- and micronutrients your body requires. For acute episodes, when the symptoms are overwhelming, a fast-acting antihistamine such a Benadryl will be helpful. This has a sedating effect, so be aware that you will feel sleepy after taking it, and act accordingly. Many people find that when the diet alone is insufficient (in your case, probably during the season in which you are exposed to your environmental allergens), supplemental diamine oxidase (DAO) in the form of Histame or DAOSin (or Umbrellux in the US) is very helpful. Please note that supplemental DAO will not be adequate to maintain tolerable histamine levels while eating a “normal” diet which is usually high in histamine-containing foods; it is only meant to aid in reducing residual unavoidable histamine.
Joneja JMV and Carmona Silva C. Outcome of a histamine-restricted diet based on chart audit. Journal of Nutritional and Environmental Medicine 2001;11(4):249-262
If you found this article interesting you can find a number of other articles on histamine intolerance both by Dr Joneja and others here, reports on histamine research here and a Q & A section on histamine with Dr Joneja here.
Dr Janice Joneja, Ph.D., RD
Dr. Janice Joneja is a researcher, educator, author, and clinical counsellor with over thirty years of experience in the area of biochemical and immunological reactions involved in food allergy and intolerances. Dr. Joneja holds a Ph.D. in medical microbiology and immunology and was a registered dietitian (RD) – now retired.
She has been a member of the faculty at several Canadian universities, starting her career as an Assistant Professor in the Department of Microbiology, Faculty of Science, and in the Faculty of Dentistry, at the University of British Columbia, Vancouver. Since 2001 Dr. Joneja has been a faculty member in the School of Biomedical and Molecular Sciences, at the University of Surrey, in England, teaching in the M.Sc. course in Nutritional Medicine. For 12 years she was head of the Allergy Nutrition Program at the Vancouver Hospital and Health Sciences Centre.
Dr. Joneja is the author of six books and a dietetic practice manual on food allergy, a textbook on Irritable Bowel Syndrome, and several distance education courses. Her most recent books include “The Health Professional’s Guide to Food Allergies and Intolerances”, “Dealing with Food Allergies”, and “Dealing with Food Allergies in Babies and Children”. Dr. Joneja’s work has been published in peer-reviewed scientific and medical journals, as well as in popular magazines. She is a respected lecturer at universities, colleges and hospitals internationally, and regularly appears on television and radio call-in shows as an expert in her field.
Dr. Joneja is President of Vickerstaff Health Services, Inc., a practice that provides counselling for people suffering from all aspects of adverse reactions to food, and resources for the professionals and care-givers who support them.